Wednesday, September 17, 2014

Struggles.

Today, I am going to talk about something that has nothing to do with home décor, DIY or thrifting. Today, I am going to talk about things that our family is struggling with. This isn’t something that is new to us, but rather something that we continually deal with, re-evaluate and tweak all the time. But first, let me give you a little back story…

Our son was born with a rare genetic syndrome and with that syndrome comes lots of issues. With the syndrome come cognitive delays, meaning he has an intellectual disability. Some children with the syndrome are also considered medically fragile and I am grateful that William doesn’t fit into that category. But that doesn’t mean that we are free of all medical issues…he just isn’t considered “fragile”. William’s dominate issue regarding his syndrome is that he is non-verbal. He doesn’t talk. He does say some words (go, bye, hi), but me and my husband are really the only ones that understand what he is trying to say beyond those three words. There are sometimes that he surprises us all and drops an “I love you” and you cry big tears of joy. Or he sings Happy Birthday to his sister and we are all in such shock that we just stand with our mouths open staring at him. But those times rare…very, very rare…like only happens once and then he never says it again. For all intents and purposes, William is functionally non-verbal.

William uses an app on an Ipad for his communication. Praise the Lord for Mr. Jobs and all of the people that made apple technology so amazing. I can not tell you how life changing the Ipad has been for William…at school. Yep, he will not use it at home. I know, I hang my head in shame. Why doesn’t he use it? Truth…because I haven’t MADE him. You Moms get me on this…I know what William wants most of the time by just looking at him. Over the past 8 years I have really honed in on the different cries, whines, grunts and gestures that he would make…just as Moms and Dads do with a new baby. But as he gets older the wants and needs get bigger and more complicated, like when he wants make a toy do something that he saw on TV but I have never seen the show…yeah, that. He gets upset, I get upset and no one wins. I am not sure why I thought that THAT was communicating. How was that communicating?? Telepathic communication? It sounds so stupid, but I truly believed that William was communicating with me.

At school William uses his Ipad more. He uses it in all areas of his day. He uses it during class to answer questions. He uses it to tell the teacher what he wants. He uses it during Speech Therapy, Occupational Therapy and Physical Therapy. He uses it during math, reading and spelling. The one area that he doesn’t use his Ipad…with his friends. He doesn’t use his Ipad to have a conversation. If you ask him a question he will answer the question but he will not go up to someone and start communicating. William is perfectly content to sit and watch everything that is going on around him and to not participate in the conversation, which is frustrating.

All that said, I have been on a mission to get my child to communicate here at home as well as communicating better at school. I need him to know that I value what he has to say. I need him to know that I will listen. I need to hear him. I need to hear what he thinks. I need to hear what he wants. I need to hear when he hurts. I need to hear about how much he loves school. I need to hear about how much he loves swimming. I want to know if he doesn’t want something. I want to know if he doesn’t like my spaghetti. I need to know how Mickey Mouse is supposed to sit in the rocket ship. I need to know…William.

So with my new mission comes learning all that there is to know about AAC (Augmentative and Alternative Communication) and about TouchChat (the app that he uses). AAC is the terms uses when someone uses some type of communication device, whether it be an ipad, pictures or other voice output system. I have been watching YouTube videos, reading blogs, reading in Facebook groups. Ya’ll…I’m not even going to kid, this shit is tough. I have been programming items into his Ipad like a mad woman and I know that I am not getting everything. I have to program things that I think he would want to say. Things like, Minions, Planes characters, favorite snacks, Gatorade flavors, his Minion shirt and his puzzles just to name a few. But think about that…you have to anticipate what your 8 year old would want to say. It’s mind blowing. Lucky for me William is pretty easy going and if there isn’t an icon for what he wants to say and lets me add it real quick.

It has been a rough start to the new school year. We are only a month in and I have already called for an IEP meeting, which IEP meetings are the worst. I hate them, they suck but they are a necessary evil. I have emailed more people within our school district in this last month than I have during his entire school career. And there are some people that may or may not be avoiding my phone calls. ha. This is a fight that I am prepared to take on…it goes with the territory. Right now we are on week 3 of waiting for the school to get things set up so that William can print out his written work from his Ipad…3 FREAKING WEEKS!!! Crazy thing is, I told them how we could do it in the very first email that I sent to the teacher but that was ignored. They are complicating the hell out of the simplest of issues. Our IEP meeting is on the 2nd, so we will see how things go after that.

Anyways, I tell you all this not to get sympathy but more for me to just vent. I feel better having typed all of this out. We are heading in the right direction though not at the speed that I would like but in the right direction. Thanks for listening Friends.

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2 comments:

Oh, Myssie... we should team up. Seriously. I'm on a very similar mission with Stephen right now, though it sounds like William communicates more at school than Stephen. He is also content to just sit back with his friends and let them talk to him, but I DREAM of the day when he says something back using his iPad. If we combined the boys together, they would be like a super-communicator!! (((hugs))) Hang in there, we'll get there. Oh, and the school people? Ugh, don't even get me started on our district too...

About Me

Hey ya'll, my name is Myssie. Thanks for stopping by! I am a wife and mother of three. I love God, my family, home decor and Diet Coke. I have an etsy shop so that I have an excuse to purchase all the fabulous things I find and avoid becoming a hoarder.